Hi everyone,
I am Tia, I’m 22 years old and I live in Cornwall. I have suffered from an illness called Lyme disease for 7 years now. For the first 4 years we had no idea what was causing my unbearable pain, decreasing mobility and terrible health. It took 4 years to find out that I have Lyme disease and several co infections. At the time we looked into treatment and the costs where extortionate so we started fundraising... I blogged my journey when I could at https://tiastimewithlyme.weebly.com and we raised a really good amount of money which meant I could start my treatment! Since then my health has improved soooo much it’s incredible and I am beyond greatful to those who helped me to gain access to these life changing treatments (trust me life changing is no exaggeration whatsoever) however, my body still is not healthy / normal and the monthly costs of the medications and treatments that are helping me to live my life again are quite high, meaning my fundraising pot has been draining and is now very low and I only recently got well enough to start working and then lost my job like many others due to covid. I currently need funds for a number of things including; a functional medicine practitioner who focuses on the biology in my body and prescribes medications to help with each symptom and attack the route cause such as a lack of certain minerals or an overload of a certain chemical along with addressing any infections present, this costs about £300 a month on average for my medication and consultations; I also take CBD oil for my pain which averages about £150-200 per bottle and helps me a lot and I have treatments such as Bowen therapy, physio sessions, reiki, oxygen therapy and massage to help balance my pain all coming in at about £20-50 per session. Since I have been unable to access these therapies due to lock down I have been in a bad pain flare which has highlighted how much they really do help me and lead me to look into other alternatives that could also help to manage my symptoms, (mainly my pain and muscle spasms, but these treatments have knock on effects to help with things like detox, sleep, inflammation and my immune system) all of which again vary from £300 - £3000. So although I am doing soo well with my health, your funds are helping to maintain this level of functionality in my life and it’s amazing which is why I am asking for your help again, I know times are tough at the moment and funds are limited but please if you can donate even if it’s only £1 or sharing my fundraiser to your socials it would make such a huge difference and continue to help me live my life rather than just exist. Thank you so much for your time and thank you even more for your support.
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Today I am riding a rollercoaster of emotions. We got my most recent blood tests back yesterday and it would seem that I am no longer in remission. I am still trying to get my head around all of this, but it does explain my most recent health dip that I do not seem to be fully recovering from. I feel numb, I just want to be better, all I want is a ‘normal’ life, why is that so hard? There is so much that I want to do and I know exactly what I want but I just can’t reach it, my body keeps holding me back. Gutted is an understatement... hopefully we can find a new doctor who is lyme literate and finally get my life back. More information is available in the video below T xx This was me yesterday, the pictures were taken on the same day about 7 hours apart.
I had a seizure at midday, as you may now know from my last post it causes absolute agony, I spent the remainder of the day on the sofa, with a hot water bottle, lots of CBD oil and a blanket, resting and trying to regain my energy enough to go to my fiancé’s football presentation. Most people would question why I bothered, if I’m in so much pain and have so little energy why not stay home? But the thing is I basically spend every day at home and I was really looking forward to an evening out with the girls. Invisible illnesses are so hard because although seizures are not invisible (most of the time) the rest of my symptoms are, and I have become very good at masking them with a fake smile and make up, meaning when people see me it’s generally on a good day where I look ‘normal’, however they do not see that I am in so much pain and in half an hour I could be crying in agony, having a seizure, or could have spent the last week resting to go and do whatever it is I am doing. I am surrounded by family and friends who understand the difficulties of my illness and how quick my health can change, meaning that they understand I may need to change plans last minute, leave early or have somewhere I can sit down if we go out and for that I am so greatful 💜 Unfortunately my seizure free streak came to an end after 39 days.
Sunday evening was my first seizure, it was shaky and absolute agony after not having one for so long. This was my second one yesterday, not as violent but still shaky enough to cause havoc with my body. I always find it hard to explain seizures, sometimes I can have warning signs that last for days, sometimes only for a short while prior to loosing consciousness, I refer to this as feeling ‘seizury’ - I suppose to me this means my head feels full and extremely foggy, it’s incredibly hard to concentrate on anything, I feel drained and all of my senses to noise, light and often touch are hightened. When the seizure is actually coming I very quickly loose ALL energy, I feel sleepy, dizzy and have no strength whatsoever to stand or talk, then I loose consciousness and the seizure takes place. After the seizure is the worst part of all, slowly regaining consciousness but feeling completely paralysed, having no concept of how long I have been unconscious, putting every ounce of energy into opening my eyes or hopefully being able to grunt or twitch a finger to answer loved ones questions such as, I am ok and do I need anything like pain killers or to move to a more comfortable position (if only there where such a thing after a seizure). Slowly my strength and movement comes back I manage to start stringing together sentences and sit up but my body still feels like I have ran a marathon and then been hit by a bus, my muscles can still spasm or tremor, my head feels like it’s being caved in by a brick and noise is SO loud even the tiniest sound can go right through me causing such pain whilst, worst of all my nerves go absolutely crazy feeling like I am being electrocuted and stabbed all over my body. I hope that very soon these seizures will stop and will be a distant memory but in the mean time hopefully this post gives an insight to living with seizures 💜 These images show how much my health can change day-to-day. The first was on Thursday, second on Friday and third on Sunday.
Since my last seizure blip my health has been pretty good and I have been so happy being able to go out with friends and to start building up my strength again it was a pretty amazing 3 weeks. Unfortunately on Friday my health deteriorated very quickly with chest pains and difficulties breathing. After being taken in by ambulance I feel let down by the nhs as they once again tried to mask the symptoms with heavy pain killers and sent me home, upon leaving I was completely out of it, collapsed getting to the car and was in excruciating pain, yet my discharge letter said I was well when I left. Despite all of this I am choosing to see the positives, I have been 29 days without a seizure today thanks to herbal medicine! (The longest I have previously gone was about 10 days) and although my chest pain is still bad and I keep passing out, generally my health has improved so much in the last year and I have done things I couldn’t even imagine when I started my treatment. I appreciate that the nhs need more research and understanding of Lyme and I hope to one day find a doctor down here who understands the complexities of this disease 💜 I have been pretty rubbish with my lyme updates recently, to be honest I have been enjoying my improving health and studying like mad for my last few months of uni. However this week I have gone from being able to meet with friends on Friday and Saturday night as well as go out for a Mother’s Day meal on Sunday to having multiple seizures and pain flares this week, just having a shower makes me need to rest and the level brain fog is crazy. These blips are expected and healing is not a straight forward line (although I wish it was) but this blip has allowed me to pause, listen to my body and appreciate that so many of my days are now good with bad days becoming less and less, I am getting stronger and beginning to do ‘normal’ things with less consequences for my body and for that I am so grateful 💚
These are my meds for the current immune boost round that I am on.
Each round I have to buy more tablets and this is still how many I have lying around the house because it’s cheaper to stock up on the ones that I know will be needed again whilst others are emergency pain killers or things I am taking a break from at the moment. Each tablet does something different, at the moment the focus is on my immune system, this will be my second round of immune boosting tablets with no antibiotics. I have come so far in my treatment it is amazing, so many of my symptoms have gotten better and are now barable with no / little pain relief on a daily basis. A year ago I could not have imagined doing some of the things that I can now, although they are small things that most people take for granted on a daily basis they are huge for me! I hope that my treatment alongside the alternative therapies that I have weekly continue to help me get back to full health 💜 2018 has been huge for me, I started treatment for Lyme, kicked most of its ass and got told I’m in remission, regained contact with old friends, made new friends, managed to go out and do a few ‘normal’ things for someone of my age and stepped on the housing ladder with my best friend and boyfriend. This year has been filled with many ups and downs but it has been the best year in many, I have come soooo far on my journey and made more progress in this last year than the 4 years before. I learnt that recovery is certainly not a straight line but it is 100% possible! The things I have managed to do (still with mobility aids and suffering after if I don’t ‘listen to my body’) I couldn’t have imagined doing this time last year, I still have a little way to go but hopefully I keep heading in the same direction and soon this hell of an illness will be a thing of the past and my future will be bright and allow me to help others going through the same as I have. Here’s to 2019 🥂 thank you so much to everyone who has supported me both financially for my treatment and emotionally been by my side, I couldn’t have done it without you, I am forever grateful 💜
I have had this Buddi wrist band for just over a month now and it has been amazing. It has a fall sensor built in and buttons that I can press to alert chosen people if I need help or feel a seizure coming on, it was especially useful a few weeks ago when I had a relapse and lots of seizures. Although someone is constantly with me they could be in another room and I quickly loose the strength and energy to shout / ask for help so pressing a button allows the alert to pop up on phones straight away, it also means when I am well I can be left on my own more often without the risk of me being on the floor for hours not being able to contact anyone. I would highly recommend this to anyone who has falls / seizures / needs full time care but would like more independence! I have been in contact with the company and received a discount code for anyone who would like to purchase a buddi band / clip -
For connect devices(the band I have): TIASTIMECONNECTDISCOUNT (£25) For Clip & WB devices: TIASTIMECLIPDISCOUNT (£50), I hope this helps some of you. Feel free to contact me if you have any questions about my band and how I have gotten along with it 😊💜 Hi everyone,
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